I get a lot of enjoyment out of creating a delicious plate of food, and this happiness comes in many forms.

As you have learned over the last year or so, I love to cook. Chances are, if I am home and am not working, I am either preparing food, reading a cookbook or food blog, or watching the “Food Network” (or all three). I get so much happiness out of putting a recipe together and preparing a tasty, new meal, and this happiness comes in many forms. Of course, I get enjoyment out of feasting on all of the tasty food that I make, as I love to eat, but the pleasure I get from cooking goes far beyond that. The mental process of learning how to create and manipulate flavors fascinates me, and this mental “feasting” brings me a whole other type of bliss. I also get a sense of delight from creating a dish and bringing something to life in the kitchen. This act of turning a set of seemingly random ingredients into a delicious meal gives me yet another type of happiness. There is also one other source of joy that my culinary adventures bring me, and this type of happiness is greater than all of the others combined. This form of happiness is what makes me truly love cooking, and it is what will keep me experimenting in the kitchen and playing with flavors for the rest of my life.

Most of the time when I am cooking, I am only making food for myself (and possibly my nurse). While I have a blast doing this, and I get a lot of joy out of my time in the kitchen, cooking for myself is not nearly as fun as preparing a meal for my friends or family. Having others eat and relish in the flavors I put together is the best part of cooking, and it is what brings the most happiness into my life. There are few things I like more than watching someone gleefully savor each and every bite of a meal I created. Watching someone close their eyes as they blissfully take in the tastes and textures dancing on their tastebuds in total contentment (something I like to call “the blissful bite”) brings me more happiness than almost anything else in the world. You would not think that something so external to me, like who is enjoying my food, would play such a large role in determining my level of happiness, but surprisingly it does. Being the introspective person I am, I have spent a fair amount of time thinking about this phenomenon and examining these different types of happiness, and these hours of self-reflection have helped me to better understand what happiness is and how it functions in your life.

As much as I would like to take credit for being the first person to realize that the happiness in your life comes in many shapes and sizes, it turns out that this concept has been around for thousands of years. Aristotle is often cited as the first person to present this concept, and numerous other philosophers and theologians have also discussed this idea over the last several centuries. In Aristotle’s depiction of happiness, he identifies four

The best part of cooking is watching others enjoy my food, especially when they take “the blissful bite.”

“levels of happiness,” and as you move up through the levels (i.e. from “level 1” to “level 2”) the intensity, or magnitude, of your happiness increases. The first level is the type of enjoyment you get from material objects and such. In my cooking, this is the type of happiness I get from eating the food I make. The second “level of happiness” comes from the feelings of achievement and accomplishment you get from completing a task or project. For me, this is the joy I feel from creating a great meal and applying my knowledge of flavors. The third “level of happiness” is derived from doing things for others or bettering the world around you. When I cook, this is the amazing feeling of euphoria that I get from watching my friends and family enjoy my food (and take “the blissful bite”). The fourth, and final, type of happiness comes from feeling connected to the universe/a higher power, and it is seen as the ultimate “level of happiness” and is what we should all strive for throughout our lives (Unfortunately, I have not quite gotten to the point where my culinary skills are on a “God-like level” yet, so I do not have a cooking example for you, but I will keep working on it.).

Even though it may have been discovered thousands of years ago, as you can see from my examples above, this notion of happiness coming in multiple forms is just as applicable today as it was then. Not only has this concept stood the test of time, but it can also be applied to nearly every person’s life. Think about your feelings during the Holidays. You get less enjoyment out of receiving a gift (“level 1” happiness) than putting up and fully decorating a gorgeous Christmas tree (“level 2” happiness), and then you get even more happiness than that from giving someone else a gift they really wanted (“level 3” happiness). Depending on your personal beliefs, you could even make the case that you get an even greater level of elation from attending “Midnight Mass” or another seasonal, religious service, which would be the highest “level of happiness” there is. We have all experienced these types of feelings, and you cannot deny that the warm, fuzzy, full-bodied bliss you get from giving the perfect present is much more fulfilling than the enjoyment you get from receiving a gift. As the old saying goes, “It is better to give than to receive.” And thanks to Aristotle, now we know why.

The different feelings of joy you experience doing various Christmastime activities are a perfect example of the different “levels of happiness.”

If two, drastically different events, like my feelings during cooking and the joys of Christmastime activities, can be explained by this concept, that is good enough to make me a believer. I am certain that as you think about the things that you enjoy doing, that you will find that these “levels of happiness” are present in your life as well. The activities that bring you the most fulfilling feelings of happiness are the the ones where you get to do something for someone else. Whether it is watching them take “the blissful bite,” seeing them open the perfect, Christmas gift, or some other altruistic activity, the things that bring the most joy to your life are those that allow you to bring happiness to others. As you recognize this mind-blowing fact, you realize that helping others is not only the “right” thing to do because it makes their life better, but also because it creates the greatest type of happiness in yours. Once you fully understand and accept this important lesson, not only will you feel a larger sense of enjoyment in your life, but the world as a whole will be a much happier place.

Did this article leave you wondering something? Are you curious about a certain aspect of my life? Do you want to know my favorite color? Submit your question to “Roll Models Mail Call,” and I will do my best to answer it in a post.

This is the first entry in my new series of posts, “Roll Models Mail Call.” These blog posts will be a little bit different from my typical articles, because the topics being discussed will be determined by the types of questions that you send my way. The questions will come from a variety of sources (i.e. emails from readers, questions submitted on www.scottdrotar.com, questions from audience members from my Roll Models talks, etc.), but no matter where they come from, I will do my best to answer anything you ask as best I can. My hope is that this will help me to better understand the types of things you want to know about, and that it will give you a better idea as to what my life is like. I am excited to see what interesting and insightful questions you have for me, and I cannot wait to answer them.

The first two questions in this series both come from people who attended my Roll Models talk, “Beyond Bedside Manner,” and they both are centered around the concept of how I try to lead a “normal” life while coping with having a physical disability.

Hello Scott, I truly enjoyed “Beyond Bedside Manner” and find you an incredibly compassionate young man. My family struggled throughout my childhood with my mother suffering severe MS, so I can certainly relate to the difficulties of the caregiver. However, I am interested in how you managed to cope with your situation upon receiving your diagnoses. The 17 year old son of a close friend of ours has recently been paralyzed from the neck down in a terrible accident. As he may still regain some function, they are trying to prepare him emotionally for the possibility that he may never regain mobility beyond where it is now. Any advice is greatly appreciated. –CA Wilkins; Massachusetts

This is a question that probably makes a lot of sense to any able-bodied person, but it may surprise you that for me, and I am guessing most people with lifelong disabilities, this question is extremely difficult to answer. What makes coping with any diagnosis so hard is that you are losing a huge part of your life and who you are. You are going from living as a healthy, able-bodied individual to living as someone with a physical disability. This is a huge transition, and it makes complete sense that so many people struggle with coming to terms with this sort of news. That being said though, since I never knew life as an able-bodied person, I have nothing to compare my life to, which makes dealing with my diagnosis much easier. In a sense, I do not really know what I am missing in a lot of ways. Just because I think it makes living a happy life with a disability easier however, does not mean that I believe it is better to have grown up this way. As I discussed in my article, “Loved and Lost,” the fact that I never had to go through the loss and grief of being diagnosed may be easier to cope with, but that does not mean that I would not trade the years of experiencing this emotional pain for even one day of life as an able-bodied person.

I would trade any amount of suffering for a chance to experience things like running, jumping, and chasing butterflies, because I know that the happiness these experiences would bring me as memories for the rest of my life would greatly overshadow any amount of emotional pain I could feel. When you live with a severe, physical disability that not only impedes, but will also shorten, your life, looking back and enjoying all of the happy, wonderful times in your life is what keeps you fighting. I live my life every single day, fighting this disease that is slowly and methodically destroying my body, trying to experience everything I can before my disability takes away yet another piece of me. I fight this way, because in the end, these memories I make while I still can will be all I have to draw happiness from, and I want a lot of happiness to choose from.

Why are you in KC when your family is in Indiana? –Anonymous

I received this question in an email from an audience member who saw my Roll Models talk, “Beyond Bedside Manner.” Given my physical limitations this is a fair question to ask, and I was surprised when I realized that I had never explicitly discussed this on my blog. Here is the response I sent:

“I live in Kansas City mostly because I went to graduate school at the University of Kansas. When I was trying to decide where to study after getting my bachelor’s degree, KU was the best fit for me (and they made a nice financial offer to entice me out here to teach and do research). It was not an easy transition by any means, and my mother was less than pleased with my choice to move so far away, but it is my life and was my decision to make. Somehow, I was able to make it work and build a happy, successful life for myself, despite having to “start from scratch” in terms of setting up caregivers and taking care of my medical needs. After finishing graduate school a couple years ago, I decided that moving just 25 miles to Kansas City, and not going through the whole process of setting up new caregivers and everything again back in Indiana, made the most sense. Living on my own has always been a dream of mine, and while I do miss my parents and siblings, I am so happy that I am getting to live my dream.”

Taking my response to a deeper level, I want to add that throughout my entire life I have never been willing to let my disability dictate my choices. While I may have to account for all of the ways that my disability will complicate the decisions I make, that does not mean that I have to make choices based around it. This may seem like a small distinction, and it is something that even my family has a hard time understanding, but the philosophical differences between “living life with a disability” and “living a disabled life” are huge. By choosing to “live my life with a disability,” as opposed to “living a disabled life,” I maintain control over my life and the path I take. My physical limitations already have robbed me of countless experiences, and by living this way, and refusing to allow my body to dictate my future, I prevent this disease from taking even more from my life. Retaining this control over the directions my life takes helps me live and make decisions just like everyone else, which brings a whole new level of happiness to my life.

Did this article leave you wondering something? Are you curious about a certain aspect of my life? Do you want to know my favorite color? Submit your question to “Roll Models Mail Call,” and I will do my best to answer it in a post.

Before I get into the meat of today’s post, I want to say that I am a proud American, and I feel extremely fortunate that I live in the United States. I am thankful that I was born in a country where my physical limitations do not automatically make me an outcast of society. I am also grateful that our government has implemented programs, such as Medicaid, Social Security and Disability, and Vocational Rehabilitation Services, to help individuals with disabilities overcome the obstacles they face. That being said, this does not mean that I necessarily agree with the way these programs have been implemented or managed, and it definitely does not mean that I agree with how the American government has treated the disabled community in general. Despite the fact that I may disagree with some of the decisions that have been made by the government in regards to disability rights and such, I still greatly appreciate everything that federal assistance programs have done for me. I know that without the assistance of these programs I would have never been able to achieve everything that I have or live the happy, successful life that I do. So if I come across as angry or overly harsh throughout this series, it is not that I am unappreciative or un-American, I am merely exercising my right to free speech/press and trying to create positive change for the disabled community.

All of the numbers and information I will be presenting in this series are based upon my own life and research. Private insurance and Medicaid benefits can vary greatly from plan to plan and state to state, respectively. While my experience may not be universal, it will still give you a good general idea of how these programs work in the real world.

At this point in the “Di$abled” series, you are well aware of the huge financial burden that the medical expenses associated with having a physical disability can be. You also learned in the previous entry about the large amount of relief that private health insurance coverage can provide for the disabled community, but that there are often insurmountable obstacles that either eliminate this source of financial assistance for disabled individuals or at least limit its effectiveness. For those people who are unable to obtain private insurance and/or require additional financial help with their medical bills above and beyond their insurance coverage, the federal government has created multiple programs to assist physically disabled individuals with their extra expenses. The most well known and widely used of these medical assistance programs is Medicaid. This program is available to any United States citizen who is determined to be physically disabled and not have the financial means to afford all of their medical needs. While this sounds great in theory, and this program does do a lot of good for the disabled community, in practice you will see that there are definitely some problems within the Medicaid system that make this program far from perfect.

You must be deemed both medically and financially eligible in order to receive Medicaid benefits.

Medicaid was created as a part of the Social Security Amendments of 1965 signed into effect by President Lyndon Johnson. According to the HIAA, Medicaid is a “government insurance program for persons of all ages whose income and resources are insufficient to pay for health care.” It is obviously much more complicated than this, and there are a few other eligibility requirements, but in a general sense this is what the program was designed to accomplish. It provides medical insurance coverage for people who cannot afford their medical expenses, at little to no cost for the recipient. A unique aspect of this assistance program is that, although it is federally funded, each state is given the autonomy to administer their Medicaid funds however they deem best. This has the effect of making the Medicaid financial eligibility criteria, benefits, and physical disability determination process different from state to state. While this flexibility does have the positive result of allowing each state to make the most effective use of its funds, as you will see, the huge differences between states can be a large obstacle for many people who require these services. Even though every state is different to some degree, you will still gain a good understanding of the pros and cons of the Medicaid system by reading about my personal experiences using these services. If you would like to find more specific information for your state after hearing my story, you can visit the official Medicaid website at www.medicaid.gov.

When I think about the Medicaid program as a physically disabled person trying to lead a happy, successful life, there are two main aspects of these services that should be discussed. These two key ideas that need to be addressed are the eligibility requirements to receive services and the benefits that are provided. In terms of eligibility, there are two types of criteria that must be met in order for you to be approved for Medicaid assistance. You have to be deemed both medically and financially eligible before you can receive services. This is a lengthy process that involves obtaining numerous medical and financial documents, as well as filling out a more than 20 page application booklet. Once you complete this mind-numbing circus of bureaucracy and are finally approved for this program, you then have to become familiar with what benefits your state provides and how to use them to cover your medical expenses. This involves both understanding what your benefits are, and also finding health care providers that will accept Medicaid as payment.

The Medicaid application booklet is a 20 plus page document that you have to complete in order to be approved for services.

In order to receive Medicaid services, you have to meet certain medical requirements. Medicaid is designed for people with minimal financial assets (the financial eligibility criterion that is discussed next) who fall into any of the following categories: children, pregnant women, parents of eligible children, people with disabilities, and the elderly. In most cases, the medical requirements for eligibility are very similar to the requirements for receiving Social Security benefits (SSI), and by being approved for SSI, you are frequently also automatically deemed medically eligible for Medicaid. Basically, you have to prove that you are physically unable to work enough to support yourself financially and cover your medical expenses. This process usually involves having your doctors write letters and fill out forms detailing the severity and limitations of your disability, which are then mailed to your state’s Medicaid office where it is reviewed. Making this long and time consuming process even more complex is the fact that, on top of each state having its own set of rules, there are usually several different medical assistance programs within the Medicaid system for each state. Every subgroup has its own set of eligibility criteria and benefits, and depending on your specific diagnosis and financial situation, you will need to apply for one of these plans. This means in addition to getting approved as medically eligible for Medicaid services in general, you also need to understand the separate benefits programs for your state and apply for the correct one. For example, in Kansas there are separate plans and benefits for developmentally disabled children, called Home and Community Based Services (HCBS), and for adults who are severely disabled but can still work, the Working Healthy Program. Even though I do qualify for Medicaid benefits, if I were to apply for any program other than the Working Healthy Program, due to my specific set of circumstances I would be denied services.

Once you have taken the time to educate yourself on your state’s Medicaid programs, obtained the necessary medical documentation from your doctors describing your disability, and have filled out the medical portion of the Medicaid application booklet describing your physical limitations, you are halfway to reaching your goal of being approved for services. Now that you have met the medical criteria, you must also show that you meet the financial eligibility requirements before you can receive your benefits. This involves filling out several more pages of questions in the Medicaid application booklet, as well as gathering various financial documents from your employer and your bank. In Kansas, you are required to send in 90 days of bank statements for all of your accounts, three months worth of pay stubs, and documentation of any other income (like home business income, trusts, real estate, etc.) when you apply for benefits. Since Medicaid is designed to give assistance only to people with “low financial assets,” you are trying to prove that your financial situation is insufficient to cover your medical expenses resulting from your disability. While every state is different in terms of what “low assets” means, in my experience it basically means that you are living month to month paying your bills, but you have no extra money beyond that. You have to have next to no savings or emergency money in the bank (typically the limit is $2,000 in liquid assets), and you must make just enough money to survive, in order to qualify for services. A more specific definition that several states have adopted is that you are only financially eligible for Medicaid if your income is less than 133% of the poverty line (roughly $30,000 for a family of four). While it does make sense to only provide these free, medical benefits to people who truly need it, the strict financial eligibility requirements that must be met to receive services can put some disabled individuals in a very difficult situation.

The Working Healthy Program is designed for people who are disabled, but still would like to work without losing their Medicaid benefits.

For many disabled people, these strict financial requirements you must meet in order to receive Medicaid benefits are a major, and possibly insurmountable, obstacle that prevent them from getting services. In my case for example, I am severely, physically disabled and could never afford all of my medical expenses, but I can still work and earn money despite my limitations. In some states, the financial eligibility criteria would force me, and others like me, to choose between working, making a living, and contributing to society without any Medicaid benefits and not working, sitting at home, and living on disability checks with benefits. Basically, either way I end up broke and sitting at home living off the government waiting to die. You surely agree that neither of these options is especially appealing, and thankfully there are some states, like Kansas, that have started Medicaid programs to give people like myself a third choice. I am able to work, actually earn and save some money (I cannot save a lot), and still receive Medicaid services thanks to a program called Working Healthy. Under the Working Healthy Program, if you are medically eligible for benefits, but are still able to work at least part time, you can still receive benefits, so long as you do not accrue too much wealth ($15,000 in liquid assets and roughly $35,000 earned a year in Kansas). This is a wonderful program as it is a winning situation for everyone involved. I get to lead a happy, fulfilling life as a functioning member of society without having to give up my Medicaid benefits, my employer gets a good employee who helps his business, I pay taxes on the money I earn that helps the government, and the government can then put more money into Medicaid funding. Everyone who is involved gains something through this program, and this is obvious by the number of other states that have adopted similar options. I know Kansas was the first state to start this type of coverage roughly a decade ago, and now more than 13 states have developed similar programs.

We are finally through our “brief, simple” discussion of what Medicaid is and the eligibility criteria for receiving these benefits. As you can already see from how much information you have just covered, this is an extremely complicated topic. My head is practically spinning from covering all of this federal bureaucracy, so I am sure that you are mentally saturated as well. So that we can both give our full attention to the rest of the information on Medicaid still left to discuss, I am going to stop here and finish our conversation in the next post in this series. In fact, this whole notion of the complex nature of these medical assistance programs is actually a topic that will be discussed in that article, when we cover more obstacles to receiving these services. We will not only discuss the obstacles, but also the benefits that the Medicaid program can provide the disabled community to improve their lives.

Before I get into the meat of today’s post, I want to say that I am a proud American, and I feel extremely fortunate that I live in the United States. I am thankful that I was born in a country where my physical limitations do not automatically make me an outcast of society. I am also grateful that our government has implemented programs, such as Medicaid, Social Security and Disability, and Vocational Rehabilitation Services, to help individuals with disabilities overcome the obstacles they face. That being said, this does not mean that I necessarily agree with the way these programs have been implemented or managed, and it definitely does not mean that I agree with how the American government has treated the disabled community in general. Despite the fact that I may disagree with some of the decisions that have been made by the government in regards to disability rights and such, I still greatly appreciate everything that federal assistance programs have done for me. I know that without the assistance of these programs I would have never been able to achieve everything that I have or live the happy, successful life that I do. So if I come across as angry or overly harsh throughout this series, it is not that I am unappreciative or un-American, I am merely exercising my right to free speech/press and trying to create positive change for the disabled community.

All of the numbers and information I will be presenting in this series are based upon my own life and research. Private insurance and Medicaid benefits can vary greatly from plan to plan and state to state, respectively. While my experience may not be universal, it will still give you a good general idea of how these programs work in the real world.

Private health insurance is the best type of medical coverage in most situations, and it can greatly improve the lives of disabled individuals.

In the first entry in this series, you learned what an enormous obstacle the medical expenses that arise from being disabled can be. The large costs of many medical necessities, like wheelchair accessible transportation, attendant care, and prescription medications, put a large financial burden on disabled individuals, as well as their families. The extra costs that the disabled community endures due to their physical limitations are frequently more than they can reasonably afford, and this often leads to individuals receiving substandard care and having a lower quality of life. Fortunately, there are both private sector and federal assistance programs, such as private insurance and Medicaid, that are designed to help alleviate some of this financial stress. While these organizations do not completely eliminate the strain of these expenses, and there are often still large out of pocket costs even with the assistance of these groups, they do give many disabled individuals the opportunity to live fulfilling lives and become functioning members of society. In the next few posts in the “Di$abl€d” series, we will be discussing the pros and cons of some of these assistance programs. This begins with today’s article about private insurance programs.

Both of my parents being public school teachers, which made them state employees, meant two things for my family financially. The first was that they would be grossly underpaid, as all educators are, and the second was that they would have great benefits. One of these benefits was access to high quality health insurance coverage at minimal cost. For as long as my folks have been employees of the John Glenn School Corporation, my entire family has had great insurance. After we paid the monthly premium and my yearly deductible, 80% of all of my medical expenses are covered by my private insurance. While not all of my medical needs were always approved and 20% is still a sizeable amount of out of pocket expense sometimes (like after 15 days in the ICU), having private health insurance of this caliber gave my family enough financial relief to get me all of the medical care I needed, while also allowing us to maintain a middle-class lifestyle. To give you an idea as to the enormous amount of money my private insurance has paid for my medical needs, only taking into account my home nursing care and pain medication, every month they pay over $25,000. That means, just for those two things, that since I have moved to Kansas they have shelled out over $1,500,000. This is an enormous amount of money that my family could never have afforded on our own, and I am extremely grateful that I have access to such quality medical coverage, as it is definitely not the norm. In fact, of all of the other physically disabled people I have met over the years, I have never ran across someone with private insurance as good as mine. Thanks to my excellent health care coverage, I have been able to see the best specialists, have my own wheelchair accessible vehicle, and purchase multiple power wheelchairs, none of which would have been possible for my family financially without the assistance of our insurance plan. There is little doubt that the great health insurance I have had over the years has contributed greatly to the independent, successful life I have created for myself, and without this assistance the lives of my entire family would have been much more difficult.

While I have been extremely fortunate that I have had quality private insurance since I was about 5 years old, I do not want to give the impression that my experience with private health insurance companies has been nothing but rainbows and butterflies. Although having private insurance has greatly improved the quality of life for both me and my family, as well as having played a large part in giving me the opportunity to achieve my goals, it has not always been easy. Anyone who has ever had private health insurance knows about the irritating clerical errors that lead to problems with your coverage. Those occasions when something is denied for payment purely because it was entered incorrectly into their system, and you have to spend hours bouncing around their automated phone system getting things corrected. While I did have to deal with these frustrating moments, at least they could be corrected in an afternoon. In addition to these irksome moments, for people with physical disabilities there are a couple much larger issues that can occur, and they both can have the disastrous outcome of you losing your coverage. These two hurdles are the problems of preexisting conditions and lifetime maximums.

When my parents first started working at John Glenn School Corporation, they had to wait 18 months to see if their insurance provider would cover me despite my preexisting condition.

Thanks to President Obama, we have all heard of the problems that having a preexisting condition can cause when you are trying to get health insurance. Basically, private insurance companies say that they will not pay for anything related to health problems you had before you purchased their insurance plan (a preexisting condition). For someone like me, who has been afflicted by a genetic disability since birth, this would essentially mean that I could never get health insurance. Fortunately for me though, there are provisions and regulations that are designed to help with this major hurdle for the disabled community. In my case for example, when my parents first started working at John Glenn when I was 5 years old, even though they had a family plan for private health insurance, I was not covered. Before the insurance provider would pick me up and cover expenses related to my disability, I had to go 18 consecutive months without being admitted to the hospital. If I did not make it the full 18 months, the clock would start from zero again whenever I got discharged. Obviously, this was a very tense period for my family.

Thankfully, I was able to make it the full year and a half on my first try, but it was still definitely a very stressful and trying time. Not only was there the mental stress of seeing whether I would stay healthy long enough to gain coverage on our family plan, but there was also a large financial strain during this period. Since a stay in the hospital costs thousands of dollars, and with my health being so fragile and unpredictable, we had to purchase COBRA insurance during this period in case I would get sick. The Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA) requires employers to provide access to health insurance coverage for a period of time after employees switch jobs or are laid off. This sounds great in theory (and it has its uses), but since employers do not have to subsidize the insurance premiums under COBRA, the insurance is very expensive. This meant that on top of paying the premium for our family insurance coverage, we also had to pay the much larger monthly premium for my COBRA insurance each month. While everything worked out for us in the long run, this was a significant hurdle that could have had a huge impact on my life. Hopefully, with the progress that has been made in regards to preexisting conditions through “Obamacare,” this enormous obstacle will not be an issue for the next generation of disabled individuals.

The second major issue with private insurance coverage for people with physical disabilities is the problem of lifetime insurance maximums. Whenever anyone signs the contract for their private health insurance, somewhere in the fine print there is a section that says how much the insurance company is willing to pay over the entire life of the plan (lifetime maximum). These maximums vary greatly from plan to plan and between providers, but usually the lifetime maximum is around $2,000,000. For healthy, able-bodied people, this number is not important because you will never need more coverage than that. For individuals with severe, physical disabilities though, this number can be reached fairly quickly, and even within just a few years in some cases. Going back to the $1,500,000 that my insurance company has spent just in the last five years on my home nursing care and pain medications, you can easily see how quickly this maximum can be reached. When you take into account hospital stays, medical equipment, and all of the other medical expenses disabled people have, it is obvious that this is a huge problem. Even if disabled individuals are fortunate enough to have private health insurance to begin with, due to lifetime maximums they would run out of coverage long before they no longer need it.

Once again, there are some regulations in place to try to help the disabled community overcome this financial burden created by their physical limitations. Luckily, there are laws that state in certain situations that if a disabled person cannot get health insurance as good as the coverage they have through their parent’s plan, then they cannot be denied coverage due to age or lifetime maximums. In my case, this basically means that unless I can find another insurance carrier that will ignore my preexisting conditions and give me the same level of service I have now (fat chance), that my parent’s insurance company cannot deny me coverage. This is why I am still on my family’s insurance even though I am over 24 years old (the normal age cutoff for dependents on health insurance) and have reached my lifetime maximum several times over. Again though, this is not the norm, and very few disabled people have access to insurance coverage as good as mine. I have met numerous individuals who hit their lifetime maximum and were forced to drastically change their lives due to losing coverage. This is a major problem facing the disabled community, and it is definitely something that needs to be addressed in the near future so disabled people can live without fear of running out of coverage.

Obamacare is trying to remove some of the obstacles preventing the disabled community from obtaining private health insurance.

Private health insurance is by far the best insurance option as far as what and how much of your medical expenses are covered. In cases like mine for example, my insurance company has spent millions of dollars over my 28 years, and this has allowed me to lead a happy, fulfilling, and independent life. Due to obstacles like preexisting conditions and lifetime maximums however, this type of coverage is not a long-term option for a lot of disabled people. While I have discussed a couple of the major hurdles for the disabled community in receiving private insurance, I have only begun to address all of the problems with private health insurance that face these individuals. I hope that my words have made an impression on you though, and that you have a better understanding of how difficult it is for disabled people to get and keep private health insurance, only exacerbating the financial burden their disability causes. In an effort to alleviate this strain on disabled people who cannot find private insurance or who reach their lifetime maximum, the government has created several federal programs to assist with medical expenses for the disabled. One of the most well known of these federal assistance programs, Medicaid, is the topic of the next post in this series.

Since I have discovered my great love for the culinary world, I have gotten a lot of enjoyment out of reading everything I can find about cooking and going through hundreds of recipes. After learning some new information on a cooking technique or discovering an interesting recipe, I am always excited to get in the kitchen and apply what I have learned, experiment with recipes, and smile with delight as I dine on a delicious dish that I created. This time in the kitchen inevitability gives me even more new information that I want to try or another way to improve the recipe, which starts this culinary cycle all over again (and again, and again,…). Through all of my reading, cooking, eating, and repeating, I have learned so much about cooking and food, and the more information I gain, the more my enjoyment and interest in the culinary world grows. Of all of the lessons I have attained though, the most important lesson I have gained came to me the other day as I was browsing through recipes for flavored olive oils (there is a pin on my Pinterest Cooking Board). This moment of clarity taught me something that is extremely important to becoming a good cook, but it plays an even more vital role in leading a fulfilling and happy life.

We all have a few things in life that we really love to do. I am not talking about stuff you just “like” to do (i.e. watching a movie, playing Minesweeper, etc.). I mean those activities where time seems to lose all meaning, and you cannot help but smile when you do them. I once heard someone describe these events as the “things that make your heart sing,” and I thought that illustrated it perfectly. I have always known that mathematics, computers, and helping others made my heart belt a song like Pavarotti, but just recently, I discovered that I now have to add cooking to this list. I was just sitting there in my living room, reading recipe after recipe for different olive oil infusion ideas, when I had this revelation. It came to me when I was going to tap the icon for Pinterest on my tablet, but I accidentally tapped my camera icon instead. When the camera popped up and showed my face on the screen, I noticed that I had a great big grin spreading from ear to ear. This was not just a little smirk, but a beaming, Cheshire cat smile that lights up your entire face. I had had no idea I was smiling like a goofy schoolboy until I saw it on the screen (my heart must have been doing a solo), but it made me understand how much I love everything about preparing food. This realization is what gave me the perspective to learn a critical lesson about the act of cooking.

By recognizing how much enjoyment I get from spending time in the kitchen and reading about the culinary arts, I gained one of the most important lessons about cooking. It is one of those teachings that is almost universal, in that it will improve any recipe or dish you can dream up. You could even go so far to say that it is the key ingredient to making any incredible, edible fare (you thought I was going to say egg, didn’t you?). This culinary cornerstone is that you have to make it fun. I know it is simple and obvious, but that is what makes it so powerful. In order to be great in the kitchen, cooking has to be something that is fun, and you love

You need to find the things in life that “make your heart sing” like Pavarotti.

doing. If you are not enjoying the process of spending hours reading about emulsions and the intricacies of making mayonnaise (my Sunday afternoon), then you will never make a terrific, tasty mayo, because your heart will never really be in it. Unless your heart starts crooning like “Old Blue Eyes” every time you read the words “whisk thoroughly” or “simmer gently,” you are better off just buying a jar of Hellmann’s and spending your time on something you do love doing. Now, I am not saying that you cannot make good food unless you are crazy for cooking like some of us, not at all. However, you will never be able to achieve the same levels of culinary achievement, because you will eventually grow bored and tired of being in the kitchen and decide your recipe is “good enough.” This is natural too, since without the fun, cooking becomes work, and no one likes working (unless your work is fun, but then…*head explodes*). For those of us who love to cook, the recipe will never be “good enough,” or even complete, because you will always be itching to get back into the kitchen to try making it with some new technique or ingredient you read about in the latest “Cook’s Illustrated.” This love for cooking is what will allow you to go beyond “good enough” to create some beautiful works of edible art. It is also what will keep you in front of the stove for hours making some dish, smiling the entire time without a care in the world.

Having a joy for cooking and having fun preparing food is the key ingredient to achieving something great in the kitchen, and the same can be said for life in general. In an earlier post, “Find Your Passion,” I discussed how important it is to choose a profession that you love doing, regardless of the money, because that is what will make you happy in the long run. This concept of keeping things fun is sort of a corollary of that idea. If you make sure that the things you do, be it work or hobbies, are so fun that your heart breaks into song, you will get a lot more enjoyment out of life. Your job will not feel like work, and your hobbies will be like little, mental vacations, where you get to escape from everything going on around you, lose all track of time, and escape into something you truly have a passion for. Not only will you find more happiness through keeping things fun though, but you will also achieve greater success. If you are doing something fun, whether it is at the office or at home, you will not get tired of making minor improvements or modifications because it is “good enough.” You will always want to keep the fun train rolling by trying just one more idea, and this will allow you to accomplish all of the great things you are capable of.

As long as you remember the key ingredient, and make your life fun, you will achieve the great things you are capable of.

I know that you probably do not think of writing computer code, reading mathematical proofs, or even making infused olive oils as fun, but that is what makes this concept so great and universal. It does not matter what you love doing, just that you love doing it. It does not make a difference if it is geeky or weird, so long as you are having fun. If your heart is singing, that is all that is really important. It is this simple, straightforward nature of this valuable lesson that makes it a key ingredient in the world of cooking as well as life. What are the things in your life that make your heart sing? Think about the things you supposedly like doing, and really ask yourself if you are actually having fun when you do them. Perhaps you have some hobbies or interests that you do not enjoy as much as you think you do, and you could better spend your time on an activity that turns your heart into Wayne Newton. Most importantly, remember that no matter who you are, what you do, or where you live, that your life should be fun. It may not be fun all of the time, as bad things do happen, but for the most part you should enjoy living your life. If you remember this one, key ingredient, you will not only be Bobby Flay in the kitchen (I wish), but you will also have a very happy, successful life.

Before I get into the meat of today’s post, I want to say that I am a proud American, and I feel extremely fortunate that I live in the United States. I am thankful that I was born in a country where my physical limitations do not automatically make me an outcast of society. I am also grateful that our government has implemented programs, such as Medicaid, Social Security and Disability, and Vocational Rehabilitation Services, to help individuals with disabilities overcome the obstacles they face. That being said, this does not mean that I necessarily agree with the way these programs have been implemented or managed, and it definitely does not mean that I agree with how the American government has treated the disabled community in general. Despite the fact that I may disagree with some of the decisions that have been made by the government in regards to disability rights and such, I still greatly appreciate everything that federal assistance programs have done for me. I know that without the assistance of these programs I would have never been able to achieve everything that I have or live the happy, successful life that I do. So if I come across as angry or overly harsh throughout this series, it is not that I am unappreciative or un-American, I am merely exercising my right to free speech/press and trying to create positive change for the disabled community.

All of the numbers and information I will be presenting in this series are based upon my own life and research. Private insurance and Medicaid benefits can vary greatly from plan to plan and state to state, respectively. While my experience may not be universal, it will still give you a good general idea of how these programs work in the real world.

People who live their lives physically disabled, as well as their families, know that they will face many more challenges than most people. In my case for example, I have always had to worry about things like my respiratory issues, my body’s pain level, wheelchair accessibility, wheelchair friendly transportation, having enough medication with me, and a thousand other things before making any meaningful decision in my life. While these types of obstacles may be the types of challenges that able-bodied people think about in regards to disabled individuals, there is another obstacle that most people rarely consider when thinking about the adversity faced by the disabled community. This commonly overlooked obstacle is the financial stresses of living with a lifelong disability. Everything from wheelchairs to hospital stays to home nursing care costs money, and just like everything else in the world of medicine, none of this is cheap. In an attempt to make more people aware of this major hurdle facing disabled people, I am going to be running a multi-part, Roll Models series, “Di$abl€d.” These articles will use my life as an example to illustrate for you the financial side of being disabled and some of the issues it causes.

This introductory post in the “Di$abl€d” series, “Putting A Price On Disability,” will show you how expensive it is to be physically disabled in today’s society. Even if you are lucky enough to have both private insurance and Medicaid benefits, like I do, there are still lots of out of pocket expenses related to your disability. There are frequently sizeable copays on many medical services, and a lot of things are not covered by insurance at all, which can create a lot of financial stress for disabled individuals and their families. This financial strain is more than many families can afford, which is why so many physically disabled people are forced to receive substandard care or go without certain equipment and medications. In some cases it can even come down to the impossible decision of choosing between buying groceries for your family or purchasing your medicine for the month. In an effort to create change so that more families do not have to worry about this financial burden in addition to the other obstacles created by their disability, I am going to share with you some of the most difficult financial moments from my life. Hopefully, after reading my story and becoming aware of what a huge issue this is, more people will be vocal about moving this obstacle out of the shadows and into the spotlight of society where real change can occur.

Once I was diagnosed, my parents quickly learned of the great financial burden facing disabled people.

Pretty much as soon as I was diagnosed with spinal muscular atrophy, my parents became very aware that my physical limitations were not only going to be an emotional and physical strain, but a financial one as well. When I was little, although I did not have Medicaid benefits, my family did have good private insurance. At this time, for the most part 80% of my approved, medical expenses were covered by insurance after I met my yearly deductible (roughly $2,500/year). While 80% sounds like a large amount, and it is compared to other insurance plans, you are about to realize (like my parents did) that it still leaves a sizeable financial burden on the disabled person and their family. To illustrate how much this 20% copay is, I went online and looked up the prices of most of the major medical equipment that my family had to purchase shortly after I was diagnosed (I am aware that these are 2015 prices, but they should still make my point). Here are some very conservative prices for just a few pieces of adaptive medical equipment with the 20% copay in parentheses:

***The vehicle copay is actually much higher, because insurance will only pay towards the cost of the lift and lockdown system and not the vehicle itself.***

Repositioning chairs like this one were just one of many medical expenses that my family had to pay due to my disability.

These five items, which are priced very conservatively, already add up to over $6,000. These things were also all bought within the first two years of my diagnosis, and my family had to withstand this financial burden for at least 18 years until I became an adult. During this time my family had to put an addition and deck onto our house to make it wheelchair friendly ($15,000 out of pocket expense), buy another Braun Corporation conversion van ($25,000 out of pocket expense), and two adult custom, power wheelchairs ($2,000/chair out of pocket expense), this alone puts the grand total my family spent on my disability to $80,000 over 16 years ($5,625/year). That is the equivalent of a really nice car, a great family vacation every year, or the difference between having a bunch of student loans or not. Like I said earlier too, this is just the tip of the iceberg as far as medical expenses go, as in addition to the other medical equipment I needed, there were also doctor visits, various tests and procedures, physical therapy, and medications, all of which had a 20% out of pocket copay. Even at this amount though, you can clearly see that this is not a small inconvenience for the disabled community, but an enormous obstacle.

Once you turn 18 years old, a lot of things change for disabled people as they become legal adults, especially in the world of medical expenses. You now can receive Social Security and Disability checks, your Medicaid benefits change, and your private insurance can change as well (each of these topics are getting their own post in this series). This happens because when you turn 18, you go from being a “dependent” to an “adult” in the eyes of the government, and your benefits are now figured based upon your earned income instead of your parents’. With Medicaid, this usually means that your benefits improve, but there is a catch. If you plan on having a career and contributing to society, you run the risk of losing your benefits if you earn too much money, as Medicaid only allows you to have $2,000 in assets. In terms of your private insurance, it varies quite a bit based on your provider and plan, but in many cases, unless you are a full-time student, you are kicked off of your parent’s coverage. In my case, since I went straight to Notre Dame after high school, I got to retain my “dependent” status, like all college students. After I graduated from college, thanks to an extremely difficult three month period my junior year of university (which I will describe in detail in another article in this series), I ended up being awarded something called, “lifetime unlimited status,” by my insurance company. This basically means that, unless I can find another provider that will offer me the same quality of coverage even with my preexisting condition, my current insurance provider cannot kick me off of my parent’s plan. This, along with my Medicaid benefits, is what allows me to have 24 hour a day nursing care and live on my own.

Even though I am fortunate enough to have probably the best insurance coverage and Medicaid services you can get, I still face a sizeable financial burden due to my disability. While I no longer have to worry about copays, because Medicaid picks up the remaining 20% my insurance does not cover, there are still numerous medical expenses that are not covered by either plan. Items that are not technically “medical,” like the hygiene supplies I

At the age of 18 all permanently disabled people become eligible for Social Security and Disability benefits.

use for bed baths, certain wound care supplies, and over the counter dietary supplements, are not covered at all. Since I just totalled all of my out of pocket medical expenses to file my taxes, I can tell you that I had over $4,500 in medical expenses last year. For someone who is severely disabled (reducing how much and how often I can work) and is starting their own business, this is a large sum of money. This is about $375 a month that I have to spend that other, able-bodied people do not, purely because I am physically disabled. So not only am I weaker, live in constant pain, and know that I will have a shorter life than most, but I also have to fork over $375 a month to just to live this way. That is like paying David Beckham to kick you in the stones or Edward Scissorhands to give you a prostate check. You would never do that, just like you can see how my medical situation is completely backwards. Crazy, right?

I hope you now have a better understanding of the financial pressures faced by disabled people and their families. Even those individuals who are lucky enough to have both private insurance and Medicaid benefits, there are still countless medical expenses that are not covered, which leaves a sizeable financial burden on the person themselves. On top of all of the other obstacles presented by being disabled, this financial stress is even more difficult to deal with. Think about what your budget would be like every month if you had another $375 bill to pay. What would it do to your lifestyle? This is what I, and thousands of other disabled people, have to live with our entire lives. Try to keep this in perspective the next time you have a one-time $75 copay at your doctor’s office and want to complain, because it could be much worse.

Now that you have a basic understanding of what private insurance companies and federal programs will and will not cover, as well as a decent grasp of the financial burden disabled individuals face, it is time to look at each of these programs more closely. In the next few entries in the “Di$abl€d” series, I am going to discuss the pros and cons of private insurance and multiple government programs. This will begin with the next post in this series on private insurance coverage.

As a result of my spinal muscular atrophy and the damage it has done to my body, I have to be very careful when I am eating to avoid choking. With my disability weakening the muscles used in swallowing, along with all of the scar tissue from my trache surgeries taking up extra room in my neck, there is not a lot of room for food to go down my esophagus. One of the ways that I have adapted my diet to overcome this obstacle is by keeping my food as soft and moist as possible. I accomplish this by putting sauces, dips, and other condiments on pretty much everything I eat. These sauces help moisten my food, while also acting as a sort of lubricant to help things slide on down to my belly. Since I put some sort of condiment on nearly every bite I take, it makes sense that as I have gotten into cooking I have started experimenting with making my own sauces and dips. I have developed, and I would nearly say perfected, my own delicious recipes for various condiments ranging from a tangy honey mustard to an Asian sweet and sour sauce to, most recently, my own blazing buffalo sauce (which is available on my Pinterest Cooking Board). The last few weeks, as I was working on my buffalo sauce recipe and going through the process of gradually modifying it until it was just right, I realized something. I realized, as I was tinkering with my concoction one little bit at a time, that the process for modifying and developing your own sauce recipe is extremely similar to the way you should go about monitoring and adjusting your body’s health, mood, and overall well-being. Furthermore, by learning this process in the kitchen, you will then be able to apply it to your life in general, which will help you be both healthier and happier (plus you will have some kick ass sauces).

The first step in developing your own sauce recipe is to find an existing recipe to use as a starting point. You can get this jumping off point through the recommendation of a friend, out of a cookbook, or by finding a well reviewed recipe online. All that matters is that you think the recipe will at least be similar to what you want your final product to be. After selecting your starter recipe, you should make the sauce exactly as the recipe describes without any alterations. Once it is done, taste the sauce several times to really get a good idea as to its flavor profile, and then put it in the refrigerator overnight and give it another taste the next day. This is important because many sauces change quite a bit after being allowed to settle for a few hours. Now that you have a working knowledge of what this recipe tastes like, as well as what needs to be improved upon, it is time to really start cooking. With my buffalo sauce, I knew that my starter recipe needed more heat (surprise, surprise), and it needed to lose the harsh, vinegar-like aftertaste that lingered after each

I knew that adding more cayenne pepper would increase the heat of my sauce, but a little spice can go a long way, so I needed to go slowly.

bite and made the flavor seem very acidic. It is always important in altering a recipe to tackle one thing at a time, and since I knew that adding more heat was as easy as adding more cayenne pepper spice than the starter recipe recommended, I did that first. I added a pinch more cayenne pepper, then gave it a taste, added a pinch more, gave it a taste, and just continued this process until it was as spicy as I thought it should be. Next I needed to find a way to get rid of the overpowering, vinegar aftertaste. Thanks to my knowledge of kitchen chemistry and flavor profiles, I knew that milk products often work well to tone down overly acidic and spicy flavors, so I decided to substitute some of the vegetable oil in the starter recipe with butter. This would maintain the high fat content that the oil provided, while also inserting some dairy to diminish the acidic flavor ruining my sauce. Once again I worked up slowly by adding a teaspoon of butter, giving it a taste, add another teaspoon, give it a taste, and so on. Eventually (two tablespoons of butter later), I found the right mix of vegetable oil and butter, and my sauce was finished. It was a great consistency, had just the right amount of heat, and had a good flavor that left you wanting more. In other words, it was the perfect buffalo sauce.

I knew that substituting some butter for some of the vegetable oil would improve my buffalo sauce, but I needed to trust my tastebuds to know how much.

If you look back at this process for modifying and developing the perfect sauce, you will notice that I probably tasted the sauce, in various different forms, at least 30 times. I let my tongue and tastebuds be my guide as I moved closer and closer to my perfect, final product. I did not jump to Google, some other recipe, or another person to try to find a way to improve my sauce. I just let my body guide me. It was recognizing this that caused me to realize that this “taste test process” is very similar to the way that I keep my body in proper balance throughout my day. In order to make sure that I am in good shape physically and my mind is well centered emotionally, I am constantly checking in with my body to see how I am feeling. I listen to what my body and brain are telling me and adjust my actions accordingly. When I feel like my lungs need a break or my hips hurt a lot, I do not go to the internet or look in a book to find a way to fix things. I just trust what my body is telling me and follow my instincts. Just like following the guide of your tastebuds is a gradual process, I take what my body tells me and make small, minor adjustments until my body says that is just right. By trusting my body and following this same method that produces a perfect sauce with my overall well-being, I am able to maintain the best possible balance within my body throughout the day and get the most out of each and every day that I can.

Developing the perfect sauce recipe is not an easy task and can be quite time consuming, but if you trust your tastebuds you will eventually end up with a delicious product to enjoy. Likewise, keeping your body and mind in the proper balance during your day is not easy either, but if you listen to what your body is telling you and go with your gut, you will end up in a place where you are both healthy and happy. This may be a lengthy process on both counts, and you may have to endure tasting a lot of bad sauces and withstand some discomfort along the way, but this method will get you to the best possible outcome both in the kitchen and in your life. Remember that you are an expert on your body, and even if you do not realize it consciously, your body knows what it needs, so trust it. Just like you would not let someone else tell you what your favorite flavor is (you would trust your tastebuds), do not rely on someone else to tell you what is best for your well-being and happiness. By applying this gradual process, you will end up well fed with a great taste in your mouth ready for the next bite, as you sit back and smile, healthy and happy, wanting more out of life.

The incredible individual that you will be learning about today is someone who has been inspiring and motivating me ever since I first heard about him when I was 13 years old. Although I have not seen it yet, with the biographical film documenting his life, “The Theory of Everything,” recently hitting theaters, it seems like a fitting time to introduce you to this amazing man. While I am not conceited nor naive enough to think that I am in the same league as him, you will quickly see that today’s inductee and I have a lot in common. We both were born with genetic, neuromuscular diseases. We are both huge nerds and have a fascination and love for mathematics. Most notably though, we both refuse to let our physical limitations stop us from leading fulfilling, meaningful lives and sharing our mental gifts with the world. Today’s topic for discussion, and newest entry into the club of Honorary Roll Models, is Dr. Stephen Hawking.

As a boy, Stephen was not considered a genius or academic prodigy, nor did he show any signs of his future physical limitations.

Stephen Hawking was born a bouncing, healthy baby boy in 1942 in Oxford, England, to two loving parents. His parents were both very well educated graduates of the University of Oxford, and their love for knowledge and learning definitely rubbed off on Stephen and his younger siblings. While he always showed a keen mind and an interest in learning, he was not considered a prodigy or especially gifted academically as a young boy. As a teenager however, he began to show a considerable affinity for scientific subjects, especially mathematics, physics, and chemistry, and thanks to the encouragement and guidance of one of his teachers, he was able to develop his enormous gift for understanding science. He ended up attending the University of Oxford as an undergraduate at the young age of 17, and although he wanted to study mathematics, to make himself more marketable (there are no jobs for math majors, which I learned the hard way) he decided to study physics and chemistry instead.

He found his time at Oxford boring and uninteresting initially, as he was not challenged by any of his course work. After he matured and got more acclimated to college life, he underwent a personal transformation and became much more personable with his peers. Stephen actually grew into a quite popular student around campus, and he even joined the Oxford Boat Club, where he coxed a rowing team. Although he once estimated that he only studied 1,000 hours during his three years at Oxford (that is not even an hour a day), he still graduated with a first-class honors degree and was accepted to study cosmology at the University of Cambridge in 1962. During his time at Cambridge he became very interested in the heated debate at the time about the creation of the universe and the work of Roger Penrose on black holes and singularity (nerd-speak, feel free to move on). By melding together parts of both of these topics he was able to write his thesis and highly regarded essay, “Singularities and the Geometry of Space-Time,” and graduate with his PhD in 1966.

Hawking’s amyotrophic lateral sclerosis (ALS), also known motor neuron disease, has left him unable to communicate without the help of a computer.

His time at Cambridge is also when he first started having issues with his health. He noticed that he had grown increasingly clumsy during his final year at Oxford, and he even had an incident where he fell down a flight of stairs. His ability to pursue his activities on the rowing team also had gotten considerably more difficult. When he went home during the Holidays of his first year at Cambridge, his family noticed that his speech had gotten slurred and hard to understand. With something obviously wrong, he began seeing various doctors looking for answers. Eventually in 1963, at the age of only 21 years old, he was diagnosed with amyotrophic lateral sclerosis (ALS), commonly called Lou Gehrig’s disease or motor neuron disease. Despite the fact that specialists only gave him a life expectancy of 2 years, he could no longer walk without help (if at all), and his speech had become nearly unintelligible, he refused to give up or give in to this despicable disease that had turned his life upside down (starting to sound like someone you know?). He returned to Cambridge and threw himself into his studies with a renewed zeal that has never diminished, and this newfound devotion to his passion for science is what has fueled him ever since.

For the last 50 years Hawking has been considered one of the the top minds in the field of cosmology and the study of the universe. He has written countless essays and proofs that are held in the same esteem as Einstein’s theories on relativity as the most important scientific papers of the 20th century. His argument for what is now called Hawking-Radiation in 1974 about the nature of black holes was one of his first groundbreaking works. He also is highly regarded for his work with Penrose on the aptly named Hawking-Penrose Theorems that deal with singularities within black holes. In addition to his academic publications that maybe a dozen people in the entire world can understand, he has also strived to pass some of his love and knowledge of the universe to the general public by writing other, more accessible works. His book, “A Brief History of Time,” which was first published in 1988, is still considered one of the best books on the market for learning about the universe, and it spent hundreds of days on the best sellers list. All of the contributions he has made to science have not gone unnoticed, and he has been awarded numerous honors and awards including the Presidential Medal of Freedom, the Maxwell Award, and induction into the Order of the British Empire.

Hawking has even taken a ride on the infamous “Vomit Comet” to show how weightlessness could benefit the physically disabled.

You would think that being the smartest person on the planet and painstakingly trying to share your genius with the world, especially when you cannot even speak other than through the use of an electronic device, would be enough for a person. For Dr. Hawking though, it is not enough to merely work to explain the entire universe to the rest of us. He also devotes a great deal of time and energy to trying to advance the rights and place of disabled people around the world. In 2000, he signed the “Charter for the Third Millennium on Disability,” which asked governments to work to prevent disabilities and protect the rights of the currently disabled. Several years ago he even took a ride in the “Vomit Comet” to show how weightlessness could potentially benefit individuals with physical limitations. Just last year Stephen accepted the now infamous “Ice Bucket Challenge” to raise awareness and money for ALS research. These are just a few of the numerous ways that this brilliant, courageous man has worked to better the lives of disabled people worldwide, and I cannot wait to see what he has in store for us next.

The following quote by Hawking from the biographical documentary film, “Hawking,” does a wonderful job of showing how disabled individuals fit into our able-bodied world.

“We are all different – but we share the same human spirit. Perhaps it’s human nature that we adapt – and survive.” – Stephen Hawking

Despite the fact that he has spent nearly all of his adult life trapped within a failing body and can barely communicate with those around him, Stephen has achieved more and done more for others than most people do in a lifetime. He has unravelled some of the secrets of the universe, helped progress the rights of the physically disabled, and been a source of inspiration for millions throughout his life. While I like to think of myself as a “poor man’s version” of Dr. Hawking, since we do have a lot in common, I know that I can never reach his level of genius or accomplish as much as he has. By learning from him however, I do hope that I can use the motivation he instills in me to help others in my own small way, and I hope you will do the same. If we all had the drive and determination of a Stephen Hawking, just imagine how much we could achieve and how much better the world would be. Although it is nothing compared to having cameos on shows like “The Simpson’s” or “The Big Bang Theory,” I am proud to announce Dr. Stephen Hawking as the newest Honorary Roll Model.

Over the last few years as I have been enjoying my journey through the culinary world, I have learned a lot, had tons of fun, and prepared some tasty creations (as well as some bad ones). While I have developed numerous skills to use in the kitchen and accumulated countless recipes though, without a doubt my forte when it comes to cooking is my barbecue, specifically my Kansas City style barbecue ribs. I can and do barbecue in several different styles, but my dry rub, Kansas City style is by far the best. My ribs are so moist and tender that when you bite into them the meat just melts in your mouth like butter, and this is while your tastebuds are exploding with delight at the smoky, sweet flavor engulfing them one by one. People have even referred to my delectable ribs as “heavenly meat candy.” Unfortunately, my dry rub recipe is a closely guarded secret that even my own mother does not know, so I cannot share it with you, but I have shared a KC style BBQ recipe on Pinterest that is very good and similar to mine that you will really like. Even more momentous than sharing this recipe however, which is saying a lot since I love barbecue, I am also going to pass on an incredibly important life lesson that you can learn by cooking good barbecue.

On the surface making good barbecue seems pretty simple. You just buy some baby back ribs, lather them up with sauce, and throw them in a nice, hot oven, grill, or rotisserie. Yet it seems like people who use this method always end up with a bunch of ribs that are tough, dry, and flavorless and always wonder why. Now, there are several things wrong with this bare bones, Neanderthal-like approach to barbecuing, but by far both the most costly and most common mistake is that they cooked their meat too fast and at too high of a temperature. Ribs need to be cooked slowly over low heat in order to remain tender and juicy, and by heating them up to 250° F or more (baby back ribs only need to reach a temperature of 175° F to be safe to eat) you are basically turning your great cut of meat into tasteless rubber. That is why every self-respecting barbecue cook remembers the rhyming phrase “always barbecue low and slow.” As critical as going “low and slow” is to making great barbecue though, it is possibly even more crucial in your life, especially when dealing with difficult situations.

When I got my trache when I was 15 years old, my life changed drastically overnight. In addition to just trying to recover from my near death experience, I also had a lot of new things to get used to and had to teach myself new ways of doing certain tasks. One of the things that was very difficult and frustrating to relearn to do was swallowing. As you can imagine, after having your neck sliced open and tubes put in, your throat can be a little sore, making swallowing pretty painful. Also, since I had been medically sedated for several days, it had been a long time since I had last eaten anything by mouth, and like any other muscles, the muscles in my throat had gotten weaker. This was especially dangerous because I was recovering from pneumonia, and if I aspirated (fancy, medical term for “swallow down the wrong pipe”) anything into my already weak lungs by not swallowing correctly, the infection could return. At the same time however, I also needed to consume as much food as possible, because while I was fighting for my life I had lost around 20 pounds. My weight of only 48 pounds when I was admitted was so low that my parents were actually questioned by a social worker from the hospital to make sure they were not neglecting to feed me. I had to get some weight back on quickly to regain my strength and fully recover, but eating was both painful and dangerous due to my difficulty swallowing. You can easily see how this put me in quite the pickle.

After my weight loss during my time in the hospital, my dog, Jorey, weighed more than me.

I realized that putting the weight back on was going to be a gradual change, since even without any swallowing issues it is only recommended to gain a few pounds a week. I also knew that there would be setbacks occasionally, and that I could not let myself get discouraged or frustrated if there was a day where I just could not eat much because of my throat. This also needed to be a slow process, because if I tried to eat too much, too fast I could end up doing serious harm to my already fragile lungs. Keeping all of this in mind and focusing on the long-term was my way of keeping my emotions low and remembering to take things slow, which would give me the best chance at successfully gaining weight. The importance of adopting this “low and slow” mindset is readily apparent when you contrast it with a more “emotional and fast” approach, as happened between my mother and I.

After I was released from the hospital and returned home, my mom was mentally, physically, and emotionally exhausted and raw from the horrific experience of nearly losing her son. As a result of this, she did not have the energy or mental ability at the time to see my weight gain situation as I had, which caused some tension between us. In her mind, even though I was home and no longer in danger of losing my life at any moment, I was still on the brink of death. She was convinced that if I did not get my weight up immediately, I was going to end up back in the hospital, or worse. While she understood that swallowing was painful and I was having to learn a whole, new way to eat without inhaling my food, my mother still was fixated on me eating as much as humanly possible. It was not that she could not understand or comprehend the difficult balance between gaining weight and swallowing correctly that I was facing, but her emotions had taken over and convinced her that if she pushed me hard enough I could gain 20 pounds in only a couple of weeks. Our differences in how we saw the situation I was in, my “low and slow” and my mother’s “emotional and fast,” created quite a bit of friction between us, and it even resulted in a lot of tension, some tears, and even a few major blowouts. Thankfully though, after a couple weeks my mom slowly got more rested and regained her control over her emotions, and with the help of my father as mediator we were able to sit down and work things out. Once she understood that my “low and slow” mindset was not me taking the situation lightly, but instead my way of creating the best chance for successfully gaining back some weight, she felt much better and supported my gradual approach. With us now on the same page as far as how to best fatten me up, I was able to successfully put on almost 12 pounds in the three months before Winter hit.

One of the most important things to remember to make great barbecue, and manage difficult situations in life, is to take things “low and slow.”

This story from my life is a perfect example of how keeping your cool and taking things gradually, going “low and slow,” can be a critical part of getting through difficult circumstances in your life. Chances are, if I had adopted my mother’s mindset and tried to gain back all of the weight in one meal, I would have ended up damaging my throat, slowing my recovery, or back in the ICU with pneumonia from aspiration. By taking things “low and slow” on the other hand, I was able to safely get back to a healthy weight in a relatively short amount of time, which definitely played a large part in my overall recovery from this tough period in my life. The next time you are getting ready to put some ribs on the grill, remember this story about my mother and I and be sure to cook your meat “low and slow.” It may take some patience and seem like a silly way to barbecue, but by maintaining this cooking method you will end up with ribs that are moist, tender, and full of flavor. More importantly, the next time you are presented with a difficult situation remember to step back and take things “low and slow.” If you keep your emotions in check and realize that great things often take time, you will find success much more easily. Just one more reason why barbecue is one of the greatest things ever. It not only excites your palette and fills your belly, it also carries important life lessons that will bring you success and happiness long after the bones are picked clean.